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More information about congenital diaphragmatic hernia (CDH) to help make choices about your child’s care and choose a CDH treatment center that is right for you.
Learn about medical travel assistance for your child and see what’s required.
Research program funded by the National Institute of Health (NIH). Some patients seen in the CHOP UDP are eligible and will also be asked if they want to enroll in the research side. You can visit their website to learn more about the research they conduct. Adult patients may be seen by the UDN site at Penn.
An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.
This resource from Children’s Hospital of Philadelphia describes how to apply for PA medical assistance as secondary insurance.
Visit this website for details on orphan (rare) diseases and treatments. Additional information like drug development, orphan product designations, and how the FDA supports rare disease research. You can also find a list of drugs approved for rare conditions and ongoing clinical trials.
This website provides resources for families that of children with any medical diagnosis, including sibling supports, caregiver supports, age appropriate books and resources. They also outline TV shows, educational resources for providers, educators, and mental health resources
Create an account to join closed support groups specific to rare genetic conditions including undiagnosed.
Signs your child may have seasonal allergies, tips to minimize exposure to allergy triggers, and how to keep your child comfortable during allergy season.
Outdoor play is beneficial for kids beyond the physical activity it provides. Get some tips on where to go and what to do with your kids this summer.